Extract

Steve Jobs once said “You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future.” This holds especially true when dealing with rare conditions. Patterns often only emerge when you step back from individual patients and clinics and look over large multicentre datasets. Clinical registries are set up with the anticipation of finding patterns that can shed light onto disease processes, prognosis and differences between patient groups.